Giving One of The Many Faces to MSA

     It was a busy month! This whole month was dedicated to raising awareness to Multiple System Atrophy (MSA).  
This neurodegenerative disorder, which affects multiple muscles, has no cure and they do not know what causes it. Therefore they do not know how to cure it. We have to raise awareness if a cure is to be found.

    To start off the month, I was named an Ambassador by MSA Organization. I cannot tell you how honored I was and how serious this is to me. It affects every aspect of my life.  Not only the plans we had for the future, but the everyday things, even the way I dress. To think I had to get rid of all shoes that have any kind of a heel, tops – if they are form fitting or have a crew neck.  If pants are too difficult to pull up or have too many buttons, I can’t wear them, so I got rid of them. I can no longer wear skirts because there is too much fabric. You know how we girls like to tuck skirts, under our chin? Well, I can no longer do this, so I got rid of them. For the past 27 years I wore eyeliner. Well, not anymore. I can’t write so can imagine me trying to put on eyeliner; it would be great if I was in the clown business. I know people think you do not need make up, but it is the same with the bathroom issues, I know the solution, it is having the choice.  When going to something and we all like to feel pretty, well,pushing a walker or sitting in a wheel chair does not make you feel this way. I can no longer brush my teeth without an electric toothbrush, snap my fingers, or clap at a performance. Can you imagine if you had this disease and not being able to do so much and also not being provide for yourself? So ,it was time to step up and be the best Ambassador I could.  I want it to be on people’s minds; otherwise they will not be working on finding a cure.

     The MSA Organization quoted me (view quote)  in one of their articles. I know that I am expressing how I feel but this necessary to find a cure; I will gladly do my part. I will gladly tell everyone how this is affecting family, my friends, and me if it means finding a cure.

     The next line of business was to get the Mayor to declare the month of March MSA  Awareness Month.  I thought I would have a fight on my hands but, the year before we had brought Tim’s Shoe (video) to see 
Jim Watson, our Mayor. I reminded him of this and wrote to him like we were long lost friends.  It worked because he sent me the Proclamation in a blue bound portfolio. My Hunny picked it up for me. I scanned it and added to Facebook and sent a link by Twitter.

     We discussed starting a Trust Fund and ordering bracelets that say Brenda’s Journey on one side and MSA Awareness on the other. These we will sell for $5 and the money will go in the Trust. One of my sisters is going to make MSA purple beaded bracelets and every bracelet sold there will be a dollar donated to the Trust. It important to raise awareness and educate. Even the Michael J. Fox Foundation had to start somewhere.

 My daughter  registered a 

team called Brenda's Journey in the Parkinson’s Superwalk held every September.

     My daughter told me she is getting a tattoo to honor me.  At first, I did not like the idea because in my mind I knew how MSA was leaving a mark on my body and I did not want MSA to mark her body as well. She has since gotten the tattoo and it is the MSA color with the wings of a dragonfly.  Beautiful! We will get a logo made that will be ours and which will also raise awareness.

I am happy to say there are so many sites, MSA communities, and blogs on the the net.  I have a page dedicated to of this on my Blog.  Even though people are miles apart they are connected, not just by MSA, but also by computers. They have made so much possible and as this community keeps growing so does the chance of finding a cure!

 You know we have to play the cards dealt but we have someone to play with it makes all the difference in the world we can find happy moments in little things. With all this love and support we are all digging in our heels and fighting the fight of our lives!